ACTIVISM SUCCESS STORIES

Thursday, June 13, 2013

Thank you
for your readership and subscription to the MS Activist blog! In assessing each
of our communications with MS activists (assessments are necessary given our
limited non-profit resources), we've recognized that this blog needs some
change. We’re shifting the way we present information in order to better
support your engagement in MS activism—so read on to find out where to find
what info!

Want News? The “news” content of this
blog will now be featured on our website. From now on, please visit nationalmssociety.org/advocacy/for an up-to-date feed of recent MS advocacy news. Clicking the feed icon will allow you to subscribe to the news feed
as you do your other important news. You can expect this news feed to:

announce or provide summaries of the Society’s
large advocacy events and activities

highlight MS advocacy progress or successes at
the local, state and federal levels. State and local advocacy news will also
appear on yourchapter’s home
page and in local blogs including:

Are You a Digital MS
Activist? In the spirit of blogging and social media engagement, please
become a digital MS activist by following the easy steps at nationalMSsociety.org/digiMSactivist,
which includes Twitter lists
and hashtags to follow (start with #MSactivist), how to find your public officials
on Facebook and more!

Craving Personal
Stories and Connection? Stories of MS activists and the importance of
activism in the MS movement will continue to be featured on our MS Connection
blog at: http://www.msconnection.org/Blog
. These stories aim to encourage other people who care about MS to take action
or to become MS activists. If you have a story to share (are you a blogger in
the rough?), please visit nationalMSsociety.org/mystory
to share, or connect with others who have similar interests and passions at MSconnection.org.

Again, thank you so much for your readership and comments
over the years! We look forward to connecting with you – and connecting you
with other MS activists and your officials – in the ways YOU want to moving
forward!

Tuesday, June 11, 2013

Each year, the
National MS Society’s Bike MS events bring people together to help create a
world free of MS by raising funds and awareness. The funds are used to support
programs, services, and MS research. The Society’s National Capital Chapter
hosted Bike MS: Ride the Riverside on June 8-9, where 900 cyclists gathered in
National Harbor in Fort Washington, Maryland, with a single mission—to end MS.

This year’s
two-day ride was the 31st anniversary of the D.C. metropolitan area’s Bike
MS, the longest-running cycling event in the area. Bike MS: Ride the Riverside
had a variety of routes ranging from 30 miles in one day to up to 132 miles
over two days. Together, these dedicated riders raised more than $700,000! At
the finish line, participants were met with food and drink along with live
music, massages, and lots of cheering fans.

Julie Baker with a teammate

Rider Julie
Baker of Fairfax, Virginia, wore an orange tutu and described the Bike MS: Ride
the Riverside enthusiastically. “It was a fun course and great atmosphere!”
Baker was riding for her daughter, Cora, who diagnosed with MS last year at the
age of 20. Baker also mentioned that she planned on riding again next year.

Bike MS: Ride
the Riverside with the National Capital Chapter is one of the Society's 100
rides taking place across the United States this year. Over the next few
months, riders in all states across the country will bike to create a world
free from MS. Are you interested in participating in Bike MS? It may not be too
late! Clickhere to find a ride
near you.

MuckFestMS, a
mud and obstacle fun-run, is also in full swing for the summer! Click here to
see if you can still participate!

Thank you to
all of the riders, volunteers, and cheering fans who help make Bike MS: Ride
the Riverside a success!

Wednesday, June 5, 2013

MS activist Steve Davis now has another way to display his
involvement with activism and the National MS Society: his car’s license plate.
In New York, MS Coalition Action Network and the Department of Motor Vehicles
launched a custom MS license plate to benefit pediatric MS research and raise
awareness about MS. The Davis’s car is
now adorned with a National MS Society license plate that has “ACTVST” across the
plate. “My daughter and I went through many custom plates available, and
‘ACTVST’ was available and just perfect,” Steve remarks. Sales from the MS
License Plate Program have provided more than $26,000 for pediatric MS
research.

Steve Davis has been an MS activist since 2008, when his
wife of 21 years, Liz, was diagnosed with MS. After Liz’s diagnosis, Steve first
got involved with the Society's Long Island Chapter through Bike MS, Walk MS,
and NYC's climb to the top of 30 Rockefeller Plaza. In December 2011, the Davis’s were asked to be
guests on Anderson Cooper's talk show "Anderson" to talk about the effect of MS on their family. “MS has affected all of us, including our
children, Charlotte and Joey,” Steve says. Liz is now in a clinical trial for a
disease modifying therapy for MS.

Liz, Steve, Charlotte, and Joey Davis on "Anderson"

This past January, Steve was chosen as Government Relations
Committee (GRC) Co-Chair of the Long Island Chapter, New York, and attended the
Society’s Public Policy Conference (PPC) in Washington, D.C. in March. On May 21, Steve traveled to
Albany, for a mini State Action Day with his 20- year- old daughter, Charlotte,
who also is a GRC member and newly sworn in Navy Recruit. Steve, Charlotte, and
other MS activists met with state legislators to ask for support for programs
that affect those living with MS.

MS activists with Assemblyman Lavine (NY-13)

Steve remarks that although progress has been made, MS activists
are still needed to push for change. “We have come a long way in the past 30+
years, and it is important that we don't stop until MS is cured or at least
treated in a way that disability from MS is avoided.” Spoken like a true activist!

To read more about the program or to order a National MS
Society license plate in New York, please click here.

Other states also offer a similar license plate program in
conjunction with the National MS Society, so please contact
your local chapter to see if you can order a National MS Society license plate
today!

Wednesday, May 29, 2013

World MS Day is today, May 29!! World MS Day’s theme highlights young people and MS, the most common neurological disease affecting young people. The campaign looks to bring awareness about MS and how it affects everyday life.This year, people from all over the world are posting their personal motto as part of World MS Day – so please go to My Motto and submit a personal motto that you live by or wisdom for when times are tough. These mottos inspire us all to do more in creating a world free of MS. Events will be taking place in over 60 countries around the world, and the Society has worked closely with colleague organizations in the MS Coalition and MS International Federation.In conjunction with World MS Day, we ask that you urge your Senators to support the United Nations Convention on the Rights of Persons with Disabilities (CRPD) so Americans with disabilities – including young adults and veterans – can travel the world beyond America’s shores. The treaty aims to enhance the rights of persons with disabilities by asserting that they have the same rights as persons without disabilities, similar to the principles of the American with Disabilities Act (ADA).Last December, the Senate failed to ratify the treaty by just five votes. The first step in the renewed ratification process is to have new hearings in the Senate Foreign Relations Committee. Click here to ask your Senators to support the CRPD and the rights of persons with disabilities around the world – to again pass the CRPD out of the Foreign Relations Committee with bipartisan support! Let’s make our voices heard on such an important day that highlights the need for a world free of MS!To find other ways to get involved on World MS Day, please click here.

Did you know that Memorial
Day – the day we take to honor those who died serving our country in the Armed
Forces – was originally called Decoration Day to honor
Union and Confederate soldiers who died during the civil war?

Be
sure to peruse this entire edition – for the first time I have included a
tidbit about a creative approach by American Samoa to address an access
issue; two tidbits pertaining to Harry S Truman, and under the ACA
Implementation News section, there are some important webinar opportunities
that may be of interest. Enjoy!

World
MS Day – what’s your motto? May 29 is World MS Day and the Society is
supporting this awareness campaign through our website, social media, email,
chapter activities, media outreach, and more. This year people are
posting their personal motto as part of World MS Day – it’s quick and easy so
please go to My
Motto and submit a personal motto that you live by. These mottos inspire us
all to do more in creating a world free of MS. This of course is a
worldwide effort and we’ve been engaged with colleague organizations in the MS
Coalition as well as the MS International Federation.

Long-Term
Services & Supports Petition. The Society is pushing out an online petition asking Congress to
create more flexible, affordable long-term services and supports (LTSS) options
for Americans. Once 25,000 people have signed the petition, it will be
delivered to Congress and hopefully launch discussion and action. Be sure
to check out the great
blog post by Michael Ogg, an activist from New Jersey with primary
progressive MS who is concerned about access to LTSS, and of course sign the
petition yourself!

Debt
Ceiling fight looms. Increased tax revenues and a payment from
Fannie Mae/Freddie Mac has provided a slight cushion but Congress will still
need to take action sometime this fall to increase the federal debt limit in
order to avoid default. Speaker Boehner is trying to corral his caucus
for a unified
approach, lest he have to rely on Minority Leader Pelosi to deliver them.

Federal
Budget Update.
I was going to leave this blank but thought that would be too sarcastic.
There really has been no movement – Sen. John McCain has expressed his dismay
that his own party is putting
up roadblocks to having a conference committee to reconcile the House and
Senate budgets, and freshman Sen. Ted Cruz announcing that he doesn’t
trust his own party in those negotiations. Meanwhile there are some
reasons why getting a budget done this year is attractive (as opposed to
passing another ‘continuing resolution’ to keep funding at current
levels).

‘Scandals’. Well,
that’s all I need to say – plenty of 24/7 coverage of the various issues out
here. Or you can watch the TV series for a different ‘Scandal’. In
the meantime, if you want a few good chuckles, look at these one-liners
by Jay Leno recently.

Legislative
Update.
Click here to find a summary of legislative issues that we provided
recently on a phone call with government relations staff.

Appropriations
Committee Targets. Big, significant
cuts are likely for health and human services programs given budget caps –
the cuts could be as much as 20% (and that’s on top of the sequestration cuts
that went into effect March 1). The impact on medical research is shown
in this
document which includes the quote “2013 is a bad year to have a good
idea.” One estimate is that NIH could lose nearly $5.4 billion if
something doesn’t give. Here’s a letter
on behalf of over 900 groups highlighting the draconian impact of the budget targets.

Favorite
John Boehner Quote: “It is hard to keep 218 frogs in a
wheelbarrow long enough to get a bill passed.” May
20, 2012 on ABC.

Limits
of Telemedicine.
NPR had a Talk
of the Nation episode talking about the promise and limitations of
telemedicine. One of the guests was Dr. Ray Dorsey who has incorporated
telemedicine as a key component of his medical practice for patients with
Parkinson’s Disease.

Truman’s Yacht rusting away.
President Harry S Truman used the USS Williamsburg as a floating White House
but now it’s just a rusting
ghost ship in Italy hoping for new life.

Speaking
of the Truman Era . . . Truman was one in a long line of presidents
who attempted to reform the American health care system. At the time the
American Medical Association was one of the biggest opponents to change. This
story talks about how a British painting played a critical role in AMA’s
successful efforts to thwart universal health care in the U.S.

American
Samoa’s Frequent Flyers. The government of American Somoa
has established a frequent flyer account to deposit
all frequent flyer miles of government employees traveling on government
business. Those miles will then be used to help impoverished medical
patients and students travel off the islands when necessary to access care.

Health
Reform Implementation News:

Gettin’ Ready! Since our
last ACA News, there’s been loads of ACA implementation activity on both the
federal and state government levels. It’s all about getting ready for the
October 1st launch of the Health Insurance Marketplaces (aka
Exchanges) and the major
reforms coming in January. Outreach and education opportunities
are ramping up, health insurers are lining up to get their new health insurance
policies certified, and really smart people are trying really hard to make
complicated stuff sound simple.

HHS Explains it all to you. HHS is
offering two free webinars (a “101” and “advanced”) on the
Marketplaces in June and July. Registration is required, and the
promise to add more dates if the demand is high. Click here for
dates and links to registration. Please circulate, and note the free e-mail
sign-up on bottom of the page.

BIG Changes for
PCIPs: To
provide desperately needed health insurance coverage to people that had been
denied coverage by insurers due to their pre-existing condition, the ACA
established a stopgap coverage program known as the Pre-Existing Condition
Insurance Plan (PCIP). Funded entirely through federal dollars, PCIPs
were up and running in every state within a few months after the ACA was
enacted in 2010, with the goal of providing temporary coverage for the
un-insured in poor health until more options were available in 2014.
Twenty-seven states chose to run their own PCIP, and others offered
coverage through a federally-administered PCIP.

As many anticipated however, the $5B
allocated for the PCIPs may not be enough, and the funds may run out before the
PCIPs’ scheduled termination at the end of the year. In February,
HHS announced that the PCIPs could no longer accept new enrollees and other
significant changes to federal PCIP coverage were made. In recent weeks,
to further reduce costs and preserve the last remaining PCIP funds, HHS
notified the state-run PCIPs that the remaining funds would be capped: the
states could reduce coverage in their own programs, or switch their enrollees
to the federal PCIP. At
last count, 10 states planned to maintain their own PCIPs, while enrollees
in 17 other states’ programs will be notified their coverage will be
switched to the federal PCIP for the remainder of the year.

NOTE: Changes
to the PCIPs could result in increased costs, the loss of benefits or coverage
for some enrollees with MS. Anyone with MS that is negatively
impacted by these changes can speak with a MS Navigator (1800-FIGHT-MS) for
help accessing Patient Assistance Programs and other support until their new
coverage takes effect.

Let’s make a
Deal: News
is trickling in from the states about their negotiations with insurance
companies that want to sell policies through the
Exchanges. Because all health plans must meet specific standards to
be deemed ‘Qualified Health Plans’, the process of reviewing and certifying
health plans is providing the first look at what policies sold through the
Exchanges will actually look like, and what
they’ll cost. Inquiring minds that want to know more about states’
efforts to certify health plans may want to check out NASHP’s free 90
minute webinar about Qualified Health Plans on Wednesday, May 29 at 2:30
EST. If you want to understand more about how the
Affordable Care Act will make health insurers more accountable for the premiums
they charge, read up on the new process
for reviewing insurance rates.

Feds Make It
Easier For States To Enroll Poor Under Health Law: The Obama
administration informed state officials that they could simplify
Medicaid to handle the barrage of potentially millions of new enrollees
next year when the healthcare law expands coverage. Medicaid Director Cindy
Mann wrote a letter
to state officials outlining several ways states could streamline
enrollment for adults, including using data people have already submitted to
qualify for food stamps and allowing adults to remain enrolled in the program
for up to a year, even if their income changes. Policy experts said letting
adults stay in the program when their income changes is a "big deal,"
because it would reduce the large number of people churning in and out of the
program and thereby affecting their ability to get care.

That’s
it for now. We hope you had an enjoyable Memorial Day, remembering those who
gave their lives in service of their country. And of course our thoughts
are with so many people who lost loved ones in Oklahoma as a result
of the tornadoes that hit the Moore, OK area.

Disclaimer

The National MS Society is proud to be a source of information about multiple sclerosis. The comments, advice and information provided by contributors to this blog do not necessarily reflect National MS Society views or recommendations, nor is the Society responsible for the content of any "off-site" Internet information referenced by or linked to from the National MS Society's Internet site. Refer to our Legal Notice for further details and please carefully research all shared opinions and advice through expert sources and consultation of your healthcare provider. The administrator reserves the right to remove any inappropriate comments (see Guidelines).